Rare diseases awareness month

Thank you so much @Sofia1992 @gr33n3y3z @QueenMia and @lulu13, it is a hard time for people who need pain management treatment other than med’s. I have an appointment for Tuesday and this time they won’t cancel it. Today, even my face and head have started burning mildly so I’m trying to keep busy and not think about it, if I try to focus on something else it keeps my mind from thinking about it.

@Elsa I have to be at the point where I can’t tolerate it anymore and willing to go to the emergency room. If I go to the hospital they only treat you with narcotics and I don’t want to do that.

@gr33n3y3z I’m not sure if they do house calls but even if they did they wouldn’t be able to come to my house. I live in Québec and he’s in Ontario, Police are at every bridge and they’re not letting nobody from Ontario in. When I go for my appointment I’m only aloud to go for my doctors appointment and need proof when I come back and they will check my car to see if I went shopping, if I do , then I will be quarantined for 2 weeks and won’t even be aloud to go for a walk and will also be subjected to a fine of 1000$. If you work in Ontario ( like my husband, he’s a truck driver) he needs proof of work to be able to cross the bridge.

I appreciate all the love and support you guys are sending

Thanks @QueenMia, I did share my thoughts, it’s so wonderful to be able to do so.🥰

@Sofia1992, I’m doing much better since my appointment. Acupuncture really helps to keep the pain bearable and my doctor put me on his emergency list to make sure this wouldn’t happen again, thanks for asking. 😊🐰

Hi everyone, it’s been a year already since I started this thread 😅 It’s February and this means Rare Diseases Awareness Month again. What a year it has been, with the coronavirus, it has changed everything. That also means longer waiting time for some of you who are still waiting for a diagnosis. It’s more difficult to see your doctors and all miner issues( treatments, tests, surgeries...) have been put on hold. This can mean more pain, more anxiety, more worries for a lot of people, I get it, but we have to stay positive, even in your tough days, it WILL get better 😊 you WILL get through it. 🥰

This year was overall a good year for me, even if I had some hiccups 😅 This virus has certainly been challenging, the thought that someone I love or if I would get this horrible virus ( especially in the beginning when we didn’t quite understand much of it) is scary 😬 So, I stay at home more, thank goodness for Netflix 🤣🤣

The weather has been a big factor this year on my body, I have had so many flare ups and the flare ups have lasted much longer than usual. I battle those days with heat compress and comedy, I find laughing takes your mind away from the pain 😂 anti-inflammatories helps too 😉 and spending time in the community, that’s my go to place 🥰 there’s always someone who will cheer me up 😊

This year, my veins have also stretched and some are very big, thanks Ehlers Danlos for making me stretchy. I also prolapse an organ, won’t say which one ( 😳 don’t worry, sounds worse than it is) it found a new place to stay, that’s all, 🤞🏻 Hope it’s happy where it is 🙃 I moved this year from a house to a condo, here, I’m on the first floor, no more stairs 😜 I could barely go upstairs anymore and it was so painful, both my knees are swollen and have arthritis 😖

But throughout the year, I keep positive, even if some days are tough. It’s important to enjoy what you can and not dwell on what you can’t ( not always easy) or your days will feel endless 😊 Do what you can and take it one day at a time 🥰

Take care of yourselves and never give up, tomorrow is another day for the hope of a cure 😊🐰🦓